Wednesday, April 24, 2013

the lengths a parent will go...

i hate epilepsy. 

I really do. 

With every passing day, we become more removed from the daily battle of seizures, but I will never forget how horrible those days were.  We don't take this reprieve lightly either - we trust and believe that they are gone for good.  We enjoy every moment and refuse to let life pass us by.  We focus on today and how wonderful it is to see our little guy thriving. 

When we first got the diagnosis I found DSEA and the online support group.  It was a definite answer to prayer.  As I've gotten to know some of these families, I continue to be amazed by their strength and resolve to fight for their little ones.  Heather, the founder of DSEA is a great example of a warrior mama.  Her little guy has been fighting Doose for a long time.  She has never stopped looking for an answer, never given up HOPE that the seizures could be stopped. 

It seems that her fight is starting to pay off.  Zaki is seizure free right now.  It's wonderful and amazing and he's doing more than he's been able to do in a long time!

But his treatment is unconventional. 
His cure is actually illegal where I live. 
His family is getting their little boy back because of medical marijuana. 

This post is not intended to open a debate about the use of medical marijuana.  Instead, it is intended to highlight the lengths a parent will go to seek healing for their child.  Watch this video to see sweet Emily and her family as they start the process of seeing if medical marijuana will be her cure.  It will also highlight Zaki and his family and the miracle they are experiencing right now. 


As thrilled as we are that Ben is doing so well, we are painfully aware that there are still so many struggling.  Ethan is still fighting to have more good days than bad.    Joshua, Jade, and Nora are still fighting this battle with the help of keto. This little one is fighting a hard battle after having a corpus callosotomy.  Gabriel is celebrating over a month of no seizures and has made it through an entire year of keto.  I mentioned a while ago that a little one, "H", (from the online support group) saw his seizures return after 18 months without a single seizure. He is trying steroid treatment right now and needs a miracle.  And the list goes on!

So what can we do? 

We can pray.  Pray for healing for these little ones and for strength for their families. 
We can give.  DSEA accepts donations to support families with medical costs as well as research to find a cure! 
We can accept.  Epilepsy is difficult to understand - embrace those struggling with it.

We can HOPE. 
Hope for a cure. 
Hope for healing.  

3 comments:

  1. Great post. My heart aches too for those still struggling. Epilepsy is so tough.

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  2. Beautiful, perfect and amazing post! I could not agree more with every word. It was such a great treat to see our boys name in here. Your blog has been a guiding light for us since before we officially had our diagnosis. Thank you!

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  3. Wow - amazing post Laurie. You said it so beautifully. How is Ben doing? Praying for you and your family. :-)

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